Wednesday, November 26, 2008

I didn't want to jinx it, so I decided to wait a few days before blogging about being released from the hospital, since the last 2 times I gushed about how great it was to be back at home I got sent back to the hospital shortly after. But this time feels *different*. I feel great, I haven't had any fevers, I have a bunch of energy, I'm eating normally, and basically I'm *feeling* normal for a change. It's so uplifting. So yes, I'm back home again and loving it.

Yesterday I had another bone marrow biopsy to see whether the induction chemotherapy was successful or not. If I have too many blasts in the marrow, it means there are still leukemic cells in there and we would consider doing another round of induction chemo (ugh) or consolidation chemo (slightly less ugh, but still ugh) to try and finish them off. If the marrow looks normal, then we would start making plans to get back into the transplant program. Obviously you can tell which option I prefer.

So the super awesome news is that my oncologist called just a few hours ago to give me the good news that my marrow looks normal for the first time. Which means that I might be in full remission soon! We weren't supposed to meet with my oncologist until next Monday, so it's super cool that he and the pathologist were able to run the labs today and give me the results before the holiday. I'm still a little cautiously excited about it, but it's hard to dispute the lab results. In my head it seems possible that next week or the week after we might see more blasts, but the fact that I show normal marrow results at this point is great news. Some of the counts, including white blood cells and red blood cells, are coming up a little more slowly than we'd hoped, but other than that it looks pretty good. It's also hard to get *too* excited about these counts coming up since the transplant will just wipe them all out again anyway, but this puts me in a much better position before going into the transplant. No word yet on what the schedule will be.

Btw, here are my platelet counts since June. Each of those little spikes are the result of a transfusion. Except, folks, for that massive spike there at the end. That's *my* marrow making those platelets. Awesome.

Saturday, November 22, 2008

Yes, I'm back in the hospital again. Joy. But that day that I got admitted was pure hell and I felt so miserable that I didn't really care about going back in. The alternative was to go back home and dread the thermometer reading that reads a fever, which means paging the oncologist at whatever hour of the night to get sent to the E.R. again, which is way more of a hassle than just being able to meander in to the hospital and go up to your room.

The day I got admitted started off fine, and my dad had just finished pushing the antibiotics through my PICC line and taking care of all the other nurse duties that Johanna normally does. We left for my doctor visit, but by the time I got there I started feeling really tired. Each time I stood up to walk somewhere, I needed to find the nearest chair as soon as possible. I didn't realize this was how you feel when you started feeling faint, I just thought I was really tired. So it wasn't until I got a chest x-ray and actually fainted that I realized, OK, this is way not cool. One minute I was standing in front of the x-ray machine, then I remember taking a deep breath, and then the next feeling I had is waking up from a refreshing nap. Except that I was on the floor of the x-ray room, being held by the wonderful lab woman who somehow managed to catch me and guide me down. I was like, "what happened? did I fall?" I remember the confusion of that moment so vividly. I didn't know if 1 second had passed or 20 minutes. The technician was awesome. She even brought a pillow and a cold washcloth to put on my forehead and let me lie on the floor for a bit. So here I am in the x-ray room, lying on the concrete floor under an x-ray table thinking "this sucks." I managed to get back to the doctor's office and then immediately got the shaking chills, which is never a fun feeling to have, even less so the way I was feeling. After telling my oncologist about the fainting and the shaking chills, he shook his head and was like, "That's it, you're going in today. Sorry." It was good that we did since I had fevers all day, then more shaking chills for 2 hours that night, then my fever spiked to 103.2. What a ride. Having that high of a fever is awful, since you start feeling delirious and your mind races thinking about all kinds of crazy things. Sleeping is impossible.

Anyway, what had happened was that my hematocrit levels (the percentage of red, oxygen-carrying blood cells) had dropped precipitously from 24% to 20% in just a few hours. A normal range is between 41% and 50%. My poor heart was racing all day just trying to keep me going. Even sitting down I couldn't get my heart rate below 120, and normally it's 60. So I got a couple units of red blood the next day and felt miraculously better a few hours later. It was unbelievable how better I felt. Today I'm feeling the best I've felt in 3 weeks. I am still amazed by the body and how easily it can adapt.

So the latest news is that after getting a CAT scan (a fun machine where you ride back and forth through a donut), they found what looks like a fungal infection in the top right lung. Technically it's called aspergillosis, and is pretty serious and typically only found in immunocompromised people. In fact, most sites I found online described it as such:

Invasive aspergillosis generally affects people who have compromised immune systems, such as people who have had a bone marrow transplant or solid organ transplant, people who are taking high doses of corticosteroids, and people getting chemotherapy for cancers such as leukemia.

Hm, sounds like someone I know. Aspergillosis is caused by breathing in aspergillus spores, a fungus (mold) that is pretty much everywhere in the environment. Everyone breathes in aspergillus spores, but your immune system easily deals with it. It's pretty much impossible to avoid. It's even in some foods and spices. But if your immune system is gone, then it's a different story. Now that I'm seeing what happens without an immune system, it's pretty scary, especially after reading about all the different infections I can expect to get after my bone marrow transplant. We're going to have to be so, so careful, even up to 3 months after the transplant. I count myself pretty lucky to have gone with such a poor immune system for so long with only that nasty ear infection.

So I'll be on more antibiotics (I'm on 3 right now) if it does turn out to be aspergillosis. Hopefully the antibiotics, along with my recovering immune system, will wipe it out. The tricky thing is that it has to be 100% gone before I go into a transplant or it can be fatal. Seriously. The fungus can spread to all organs of your body, including your brain. Sounds like an episode on House. But the good news is that I only had a low-grade fever last night and I haven't had a fever all day today. So hopefully I'm already on the mend. But keep your fingers crossed.

In other news, my platelets are now at 186!!! This is in the *normal* range folks. I've been as low as 6, so this is awesome. I can already tell the difference in the amount of time it takes for a needle poke to stop bleeding. It could take 10 to 20 minutes, now it's less than a minute sometimes. Cool!

Oh, and they removed my PICC line to rule out any infections, which is sort of cool, except that now they have to run IV fluids through a peripheral line, and I've gone through 3 in the last 2 days since they tend to clot easily (especially with all my platelets). Ugh. I kind of miss my PICC line. I had it for 2 months.

That's it for now. If all goes well I'll be going home on Monday. Can't wait.

Thursday, November 20, 2008

This is Johanna, just thought I'd give a little update until Steve feels up to it. Steve had an exhausting day. He was running a fever last night, and the night before also, but it was not terribly concerning until this morning when it hit 102.3. I spent a while debating with Steve about paging the doctor, but we waited since he was due to see him this morning anyway. This is where it gets interesting (not for me since I was just at work!). His parents took him to his appointment and they were concerned about his fever of course and sent him for a chest x-ray to look again for pneumonia. Steve says he had to ask the x-ray technician if he could sit down and rest. He had to stand for the x-ray and apparently he fainted at this point and woke up at the floor. Kudos to the x-ray tech who apparently eased his transition from standing to lying on the floor and bringing him a pillow. They got the necessary x-rays and went back to the oncologist. The oncologist sent him to see the infectious disease doc upstairs who pulled out his picc line to rule it out as a source of infection. (yay! I was worried that this was causing something but still we can't be sure). Then back to the oncologist who admitted him to swedish again. (new room again- hopefully we won't try out the whole floor!)

On a side note, we are all very pleased to see Steve's platelets almost at a normal (non-cancer) level! His other counts are approaching normal at various degrees of speed. This is to say that although Steve isn't feeling great, his body is doing a tremendous job at recovery even while battling a fever.

We just ordered our dinner and I'm hoping Steve is up for another episode of Lost.

Tuesday, November 18, 2008

Check out this cool hat my friend, Vanesa, knitted for me last week. How awesome is that? And I just got it in the mail today, perfect timing! It fits perfectly and covers my bald head nicely. Johanna says it's super cute. I like it a lot :)

So I had a blog post all lined up to talk about how great it was to be at home again (I was discharged last Friday), but I came down with a fever on Sunday night and a pretty bad case of the chills, so we paged my oncologist and he sent us to the emergency room. After a bunch of tests and x-rays they thought they saw some pneumonia, so it was back for another stay in the hospital. Ugh. We got to the emergency room at midnight, and since my temperature had returned to normal shortly after arriving we figured that we'd be turning around and heading home. But protocol dictates that they run all their tests so by the time we got the results for the blood tests and x-rays, it was about 2:30 in the morning. Finally the E.R. doctor comes in and says she thinks she sees some pneumonia on the x-rays. Scary stuff, even when you're healthy. So the E.R. doctor called my oncologist and they decide to put me back in the hospital. Then we have to wait for a room to open upstairs, so by the time we get into my actual room it's 5:30 in the morning. And since they thought it was pneumonia, they weren't quite willing to let me go home the next day. So another 2 nights in the hospital it was, and man, I was really ready to be out of there this time. But I'm home now! Hooray!

So in total I've spent 15 days in the hospital (a week in the hospital for induction chemo, then a week recovering at home, then another week in the hospital, then a weekend at home, then another 2 days in the hospital). Being in the hospital is really miserable most of the time. If you're feeling well, they don't want you there! So you're only there when you feel like crap. You're also away from home, hooked up to an IV pole 24 hours a day, and woken up at all hours of the night, just to mention a few of the annoying things. Hopefully the 3rd time's a charm for being released this time.

But being home is great! The first thing you notice after leaving the hospital is how nice it is to wear street clothes again, and how refreshing it is to see *normal* people on the streets doing *normal* things. Even just being outside and smelling the crisp, fall air is uplifting.

Oh, and did I mention that at the hospital I also had to pee in a bottle *every* time I went to the bathroom, so that they could record it on my Input/Output chart? How annoying is that? And since I was on so much fluid from the IV drip, I was peeing at least every 2 hours, all through the night. So peeing in a bottle when you're super tired at 2 a.m. after maneuvering your IV pole into the bathroom, then recording the amount on the chart in the dark, and doing this all while feeling tired and sick and miserable is really a testament to how demoralizing all of it can be. I just thought I'd mention this, since it's pretty nice to be able to use the bathroom like a normal person again :)

Anyway, we spent last weekend walking around outside to help get my strength back (I've now lost 16 pounds since starting the induction chemo), doing chores around the house, making dinner, watching a lot of TV, and just chilling out on the couch. Still not having a huge amount of luck getting normal food down since it makes me nauseous sometimes just thinking about food, but it's getting better by the day. Today was a big milestone: I had my first slice of pizza! I haven't had pizza in 3 weeks. Things are steadily improving.

Other good news: my liver problems seem to have gone away (hooray), and my white blood counts are steadily increasing (woohoo!). As an example, just a week ago my neutrophil count was at 0.00, then it slowly started rising: 0.01 one day, then 0.03 the next, then 0.07. Yesterday they were at 0.4 and today they're almost at 1.0! A normal neutrophil count is above 2.0, so I'm halfway there. Keep your fingers crossed that they keep going up. Having more neutrophils will help a lot in battling the constant fevers and infections I keep getting.

Oh, and I'm still on the nutrition IV drip, even at home. The home health care nurse delivered 2 huge boxes of supplies which we had to buy a small cart to hold it all. Including are things like saline flushes for my PICC line, gloves, alcohol wipes, syringes, vials, and all kinds of other stuff you'd normally only find in a hospital. We even have one of those red BIOHAZARD boxes that you use to throw away sharp needles and other stuff. Also included was a cooler full of IV bags that contains all my nutrients, vitamins, and fats, and a small IV pump for my infusion. So basically at 9pm every night, we flush my PICC line, inject various vitamins and minerals into the nutrition bag, then Johanna plugs me into the pump with the IV bag attached. It's kind of cool, since it's way quieter than the pumps at the hospital (they whir and click all night), and the portable pump even comes with a backpack that can hold both the IV bag and the pump. This way I can walk around the house or even go outside without it being too big of a deal. It's a 12 hour drip, so I have to sleep with it overnight, but I've been hooked up to the IV for so long it's not even that big of a deal. And it's reassuring to know that I'm still getting nutrients even if I can't eat much. Hopefully we'll be able to wean me off of it by the end of the week.

That's it for now, here are some pictures from the last few days:

Johanna and I at Stumptown. The coffee was too much for my poor stomach though :(

Thursday, November 13, 2008

Wow, my friends rock. This morning 3 of my friends, Farookh, Simon and Eugene (pictured at left), went down to Acme Barbershop and asked to get their heads shaved -- on purpose! They did this in support of me, and I think that's just plain awesome. In fact, they managed to pull off some pretty sexy new looks in the process. I'll post a picture of me later showing my new bald head as well, but don't expect anything sexy like these guys. Especially since mine will be in a hospital robe, bleh.

Speaking of hospitals, I'm still in the hospital but we've managed to get a handle on my fever so I might be going home as soon as tomorrow. Hooray! The biggest fear for me is that I won't be able to get 3 meals a day down at home, since I am still suffering from mouth ulcers, and also because it's hard to keep simple foods down due to my messed up intestinal tract. At the hospital I am on this fancy TPN (total parenteral nutrition) IV drip that supplies me with 2,500 calories per day of protein, lipids (fats), vitamins and minerals, basically I don't need to eat solid food at all. It's been a total life-saver since while I was recovering at home last week I would stress out at each meal just trying to figure out what to eat and how to keep it down. Lately I haven't had to worry about that which has been a huge relief, though I have been trying to eat a little bit of food each day so that I can ease myself back into solid foods, even though it's a bit of a struggle.

The other issue is that they've discovered some liver problems, including jaundice (my eyes are slightly yellow), all of which are likely a result of the high-dose chemotherapy. Hopefully this is something that goes away by itself, but they're monitoring it closely to see what happens next. Kind of a bummer to start having problems in a separate part of my body, but liver issues aren't totally unexpected. It could also have been caused by the anti-cholesterol drugs I was taking during the chemo, which was part of a clinical study that showed that taking this particular drug helped give patients a better response to the chemotherapy, even for people that don't have high cholesterol. But the dose I had to take was pretty high (16 pills a day) and so I basically ended up taking a 45-day supply of cholesterol drugs in just 3 days. But the doctors are good and are on top of things, and hopefully it will just go away by itself.

Also, I was blown away by all the comments you guys have been posting recently. I've been feeling pretty down the last few days and all your comments have really helped cheer me up. Thanks! I have some future blog posts lined up to answer some of your questions too :)

Here are some pictures of the fun my friends head while getting their heads shaved :)Simon, looking a little like Dr. Evil

Sunday, November 9, 2008

Well, it looks like this will be the last you see of me with hair for a while. Woohoo! Not like I have a lot to begin with. Oh and Johanna wanted to take a picture showing how much I've improved since that awful picture of me from a week ago. Wow.

So while I was vacantly pulling on my sideburn hairs this afternoon I found myself holding onto a small bunch of them. I tried a few other spots and sure enough, the hair came out with little resistance. I was wondering when this would happen. I'd been pulling on them every few days just to check. I should have suspected something in the last few days since I haven't shaved in several days and I look like I only have a day's worth of beard. At least that will be one advantage during this. No need to shave!

Now the trick will be to shave it all off before it really starts falling out. I don't want to wake up one morning with hair all in my bed. Oh, and some hairs come out while others don't. For example, my chest hair comes out, but my arm and leg hairs don't. It will be interesting to see what I look like next week.

By the way, I just wanted to let you guys know that I read every single comment you guys post on my blog, even if I don't respond. I get an email each time a new comment appears, so you can be sure I never miss any. You guys have been super supportive so far and it makes my day when I get that email announcing someone has commented on my blog. It's also probably the easiest way to show your support, which is something I get asked about occasionally since it's not really feasible to have everyone visit me in the hospital or at home with my immune system so low.

So if you want to let me know that you're thinking about me, send me an email or just comment on my blog! It really does make my day. Ciao for now.

Well, I'm back in the hospital again. I've had a fever of exactly 102.3 for a few days now, so I feel like it should be my new radio station or something. We checked in last Friday after I had a fever of 103 at home. We even got a pretty swanky room at the hospital this time. The doctor from the Center for Infectious Diseases and Control (cool title) has been running cultures of my blood to see exactly what I'm infected with that's causing the fever.

See, I have absolutely no immune system right now. My white blood cells are pretty much all gone, which means I have no neutrophils, no lymphocytes, no nothing. At least before when I would complain about my neutrophils being low (like 0.2), at least I had *some* neutrophils, and there were at least a few of each of the other types of white blood cells floating around in there as well. But the induction chemo wiped them all out, and until my counts return in a few weeks, I've got nada, zero, zilch. So the doctors pretty much assume you'll get infected with something. I think they just send you home after the induction chemo until you report back with a fever. And I'm not even infected with something external. For example they think I one of my own intestinal bugs is running wild. So they've been treating me with different antibiotics until they know exactly which bug it is.

Being in the hospital used to seem like it might be fun, especially during recovery, since it seemed like there would be a lot of time for personal stuff like reading and watching movies and playing on the computer. I mean, how hard can it be to recover? But you feel like crap so much of the time or nauseous or just plain tired that it doesn't make anything seem very fun at all. Plus, nurses and doctors and technicians and all kinds of other people are constantly coming into your room at all hours of the day and night, so it's hard to even get a few hours of sleep without getting interrupted. For example, every morning at 4:30am someone comes in to draw blood. This isn't so big of a deal with the PICC line, but then at 5am someone else comes in to check my vital signs (blood pressure, temperature, etc). Then at 7am I may hear the alarm on my IV pole beeping (I'm hooked up to the IV pole 24 hours a day for the antibiotics drip and food nutrients), so I have to hit my little nurse button to call someone in to have them see whatever's beeping, which could have been me rolling over on one of the tubes hanging out of my arm, or one of the antibiotics bag going empty, or some other random thing. (In fact, no kidding, while I was writing this paragraph the nurse came into do another blood draw).

But I complain a lot, because it does make me feel good knowing they're actively trying to figure out what's giving me this infection and they seem pretty confident that once they know, they'll have the right antibiotics to kill it. Btw, while I was writing *this* paragraph, the nurse added a new bag of antibiotics to try out on me. I'm also hooked up to the total nutrition diet thing, so technically I don't have to eat which is actually a big relief, since eating is still a major obstacle right now with my mouth and throat and intestinal tract still all wonky. I do crave being able to eat a pizza, or a big cheeseburger or Thai food or a big bowl of Pho, but for now I'm happy to not have to worry about it since the thought of it makes me sick.

I'm also a little bummed since next Wednesday was supposed to be my transplant date before I got sidetracked with all this induction chemo crap. It basically means that I'll be doing this all over again for the transplant in another 6 weeks. So I guess I know what I have to look forward to. But I was kind of hoping to being on the road to recovery for real by next week. Oh well. it will get here soon enough.

Friday, November 7, 2008

This is Johanna. Steve is once again enjoying a stay at swedish hospital. He checked in today due to our week long battle trying to keep his fever down. After subsisting on less than 500 calories of carnation instant breakfast we were hoping to get some better medicine for his mouth pain so he could eat, but due to the fever, being in the hospital and getting Total Protein Nutrition (TPN) is a better solution. The TPN looks like a big bag of lemon-lime gatorade and I hear he'll get lipids (fat) in the morning.Steve's room is almost luxury by hospital standards. It's about like a studio apt. He has a huge window view of downtown, mostly facing the port of seattle. His TV and DVD player are in an armoire. There's a love-seat with a fold out bed in it. It's pretty sweet. Had there been more advanced warning of his "vacation" I would have packed our movies- but I'll just bring them tomorrow.At some points during the day he says he feels great, and at other points he says he feels terrible. He's fairly sharp mentally and is starting to return to his normal self in asking the doctors more questions about the drugs he's being given. He doesn't yet have much energy for conversation and is hardly using his phone (but if the text message goes off I typically read it to him).On a lighter note I finally got to try the chocolate cake in the cafeteria that Steve recommended from his room service. It was really great all around. I'm glad it's the weekend so I can spend more time with him and hopefully see his improvement!

Wednesday, November 5, 2008

Thanks to Cindy and Brian and the family for posting away in my absense. Let's just saw I was out of sorts and in no mood to even look at a computer monitor.

But I want to tell you about mucositis. You do not want this. If someone even mentions the word or tries to include it as a party gift, you run the hell away from the person in the opposite direction as fast as you can and report them to social services.

See, I was in the hospital for 5 full days as my family so caringly blogged about since I was a useless blob during this time. The hospital stay wasn't too bad, but the side effects were pretty tough and included severe nausea, headaches, fatigue, and a general lack of motivation to do anything. Other annoyances were vital sign checks every 4 hours and blood draws every morning at 4:30am. This was especially annoying since my IV pole was continuously dripping the nasty chemo fluids into my body for 4 days straight, 24 hours a day, including going to the bathroom, eating, etc. One particular morning around 3am this was made even more incredibly annoying while they had stuck me with a 2nd IV to get a whole blood and also had a blood pressure monitor wrapped around my around going off every 10 minutes since I had a fever. Trying to navigate to the bathroom with all that crap and not set of all the crazy alarms was quite an accomplishment.

But back to mucositis. The nurses and everyone warned me about this. So I tried to be the perfect patient and did everything I could. But then it started off in the corner of my mouth, like a pizza-burn-on-the-top-of-your-mouth sensation. Ow. And I had a been a diligent mouth cleanser, using the prescribed mouthwash not 4 but 8 times a day. Neverthess, it was during a plate of linguine with red sauce that I noticed a funny texture in my linquine and realized the entire inner surface of my mouth was schloufffing off. It didn't stop there and about I knew it the entire inside of my mouth was sitting in my plate. My mouth now looks like a ghoulish halloween picture where you can see all the red blood cells and all the ligaments in there. So you can imagine the pain of trying to eat anything at all at this point. To make matters worse, I'm stuffering from nausea so I have to get past the nausea part first will pills, then get to the eating part, and on top of all that, most food tastes like shit anyway when you're undergoing chemo. So far the Carnation instant breakfasts work well, and there is even some gel I can swish around after eating to alleviate some of the pain. The other gross part if you're not grossed out already is that the the chemotherapy affects the lining all the way into the stomach, so any liquid that goes in essentially goes out both holes down there, if you know what i mean. So yes, I've been sleeping a lot mainly to just get through all the side effects, but I am feeling a little more alert each day. Each 3 meals a day is a healthy struggle but it's worth it.

So now my goal is to survive the next several weeks with a white blood count of 0 (we check for fevers 4 times a day) and to get some nourishment in me, no small task with all the obstacles thrown in our way. I do feel a little more alert every day (I even watched the electoral fun on Nov 4) but I am still sleeping most of the day, mainly just go get through this hell and let me body heal as fast as it can.

Sunday, November 2, 2008

Hi, this is Steve's family. We are writing a guest post since Steve called in sick and is feeling really crummy. We have taken over his blog! He said we could upload this picture of him. His face and the rest of his body are red and puffy. After 6 days in the hospital, Steve came home on Saturday. While he was in the hospital, he was attached to his chemo "pole" constantly while it dripped lots of fluids into his system. We came up with lots of names for the pole (Roman Pole-anski, Sarah Pole-in, Pole McCartney, Ichabod Crane, Pope Pole II, Pole-tergeist, Pole-dancer), but in the end Na-pole-an Dynamite stuck.

The hospital had an extensive menu--it was so big, we decided to rate the various items we tried on a scale of 1 to 5. You could call in your order and they would deliver it to his room. They even had a special menu for immuno-suppressed patients like Steve. On the first day, he was really excited about the cheeseburger (5 stars!). They even had salmon, pasta, smoothies, iced mocha, and pizza. By the fourth day, his appetite for food wore off and he mainly ate yogurt and applesauce.

Shortly before he left the hospital, his blood and platelet counts dropped

(as expected with chemo), so he needed transfusions for both. They let him go home to recover because there are fewer germs at home than in the hospital and it's a nicer place to be with more of his toys. He will need to go in for blood draws every day, though. The effects of the chemo are pretty harsh, so he is feeling miserable. He slept for about four days straight from Thursday to Sunday. He still spends most of his time sleeping and trying to think of a food that he might actually feel like eating. It changes from minute to minute... enchiladas, then tuna, and then mint chip ice cream. Now suddenly he wants chicken fried rice! But he can only manage to eat bananas, yogurt, applesauce, and juice.

About Me

About this Blog

On June 5th, 2008 I was diagnosed with a blood disorder called Myelodysplastic Syndrome (MDS). What this means is that my bone marrow is unable to produce enough red blood cells, white blood cells or platelets. On January 27th, 2009 I had a bone marrow transplant, the only known option that offers a full chance of a cure.

I'm using this blog to help keep friends and family up to date, and also as a way for me to focus my thoughts and understand this disease so that I can power through it and beat it. Thanks to everyone for all the support. Your comments really cheer me up. I read them all!